Families Fighting for Cancer Cures: Generation LLS

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As an organization founded by a family for families, The Leukemia & Lymphoma Society (LLS) is celebrating 70 years of impact on generations of families, researchers and volunteers while looking to the future by redoubling its commitment to improve treatments and care for children with cancer.

To accomplish its bold vision for children, LLS is launching The LLS Children’s Initiative to deliver cures and care for children by disrupting drug development for pediatric cancers and expanding the education and support the organization provides to children and their families.

Founded in 1949 by grieving parents after losing their 16-year-old son Robbie to leukemia, LLS is harnessing inspiration of the past to propel the organization forward in its quest to cure cancer. The LLS Children’s Initiative seeks to accelerate treatments with fewer harmful side effects, so young patients with cancer not only survive, but thrive, for generations to come.

“We are determined to change fundamentally how children with leukemias are treated,” said Gwen Nichols, M.D., LLS chief medical officer. “Children are not little adults and the ways that cancers behave in children, and how children respond to therapy are profoundly different. Further, development of new treatments for children with cancer has not kept pace with progress for adults. In fact, only four cancer therapies have been approved for first use in children over the past three decades. We must do better for children now.”

As a leading convener in the cancer arena, LLS is teaming up with industry, regulators, other advocacy organizations and major, renowned medical centers and researchers, to bring this effort to life. A vital voice the organization is bringing to the table is that of parents who have lost children to pediatric cancer. LLS has enlisted one of the most influential parent advocates in the pediatric cancer community, Julie Guillot, who lost her son Zach to one of the deadliest forms of blood cancer, acute myeloid leukemia (AML), when he was just nine years old. Guillot is working with LLS to generate alliances and support for a new master clinical trial using precision medicine for pediatric cancers, a key component of The LLS Children’s Initiative.

“It’s too late for my son Zach, who endured round after round of brutal chemotherapy treatments, radiation and bone marrow transplants over the four years he fought his AML,” said Guillot. “Ultimately the toxicity of the treatments was too much and he died at age nine. Losing Zach was unimaginably devastating to my family and me, but his struggle makes me all the more relentless about the urgency of speeding the development of better treatments. Working together we can save the lives of thousands of kids just like Zach.”

LLS is taking on children’s cancer from every direction, more than doubling its investment in pediatric cancer research, while expanding services to help children and families cope with the financial, emotional and psychological impacts of a cancer diagnosis. The organization continues to lead with innovative new clinical trial models that use next-generation genomic technologies, and plans to launch its global precision medicine master clinical trial in pediatric acute leukemia early next year.

“It will take an unprecedented collaboration to bring this global clinical trial to fruition and LLS has the track record and is the right organization to bring all the stakeholders together,” said Nichols. “Our successful Beat AML Master Clinical Trial for adults with AML, launched in 2016, shows we can get this done, and is a model we aim to replicate for children. Just like with Beat AML, LLS will be the sponsor of this trial, leveraging our unique position as a nonprofit organization who puts patients first to bring new and better therapies to patients, faster.”

Nichols added that LLS is currently setting the groundwork and convening industry leaders for this collaboration, including pediatric oncologists, the U.S. Food & Drug Administration, pharmaceutical companies, parent groups and other nonprofits to identify the underlying causes of acute myeloid leukemia (AML) in these children and find or develop the right therapies to treat their disease.

Beyond the Children’s Initiative, LLS is driving forward a strategic agenda focused on the most pressing priorities in the blood cancers:

  • Prevention and Survivorship – Advances in next-generation genomic sequencing are leading to the first-ever discussions about halting blood cancers earlier and initiating the first-ever discussions about blood cancer prevention.
  • Precision Medicine and Immunotherapy – LLS pioneered the precision medicine and immunotherapy revolution, and continues to lead with innovative new clinical trial models, bringing the promise of cancer cures to more patients and their families.
  • Myeloma – LLS is propelling meaningful treatment advancements while raising awareness of this disease, particularly in underserved populations, including African American communities, where prevalence is twice as high as among white Americans.
  • Beyond Blood Cancer – LLS-funded blood cancer research has led to game changing discoveries that are now benefiting patients with other cancers and diseases.
  • Financial Support and Cost of Care – More than 100,000 volunteer advocates join LLS’s Office of Public Policy in working to minimize the financial toxicity of cancer.

“We have remained true to our founders’ vision and their belief that leukemia and other blood cancers were indeed curable,” said Louis J. DeGennaro, Ph.D., LLS’s president and CEO. “Our 70th anniversary is an opportunity to not only reflect on the tremendous progress we have made in helping families fighting blood cancers, but to leverage our impact on generations of families, researchers and volunteers as we look to the future and work toward a world without these diseases.”

To recognize this milestone, LLS is inviting patients, caregivers, survivors, volunteers, healthcare professionals, researchers and others to join the Generation LLS storytelling initiative and inspire even more families.

Help grow the Generation LLS family tree to uplift all those touched and affected by blood cancer: www.lls.org/GenerationLLS. Upload a photo and share how you have been impacted by blood cancer or LLS's work, or what it means to be part of the generations fighting for cures. Share on your social channels using #GenerationLLS to encourage others to join you.

Julie Guillot lost her 9-year-old son, Zach, to acute myeloid leukemia (AML) in 2014. He was diagnosed in 2010 and received almost every therapy available for pediatric AML, but passed away following his third bone marrow transplant. Today, Julie is a volunteer working on LLS’s Children’s Initiative with the hope that other moms do not have to experience what she did. Watch video.

In 2015, Abby Breyfogle’s twin daughters, Kenedi and Kendal were diagnosed with acute myeloid leukemia (AML) at three months old. After enduring 17 months of intense treatment, Kendal died in September 2017. One week later, Kenedi celebrated two years in remission. The Breyfogle family continues to fight blood cancer in honor of Kendal. Watch video.

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